Understanding Life with Autism
BY CAROLINE KORNEGAY: STAFF WRITER
July 3, 2006
Maryann Sarno knows all about temper tantrums.
Delaney, Sarno's granddaughter, has
pitched a temper tantrum or two for the record books.
What is upsetting her is sometimes a
mystery to Sarno. Delaney Sarno is autistic, making it harder for
her to communicate.
Sarno has heard the tsk-tsking of parents and grandparents around
her who think she has a bratty, uncontrollable child.
Autism is a brain disorder that
affects social and personal behavior.
"A lot of times, lights and noise and
confusion of big crowds like here or in Wal-Mart, it's the
fluorescent lights, is really what it is," she says. "When the kids
are having what we call meltdowns, they just look like they are
misbehaving, (and) they are misbehaving as far as (action goes) but
they really cannot help it."
Delaney's frustration and confusion
can bubble over in public settings.
The disorder has many different
subgroups and has a spectrum of symptoms, it is referred to as
Autism Spectrum Disorder.
In North Carolina, between 25,000 and
30,000 individuals have been diagnosed with the condition, according
to the TEACCH
Web site provided by the University of North Carolina at Chapel
Research from the Centers for Disease
Control suggests as many as 1 in 166 people in America fall
somewhere on the ASD spectrum.
"It can be a challenge," her mother,
Kristen Sarno, says. "Autistic children really need a routine and a
structured schedule. Laney is pretty good if we have a change in
structure, she can pretty much flow with it, but there are some
times that she can't handle it, especially if we go to a store, and
it gets to be overwhelming or too much.
"She's an awesome kid. Unbelievable."
To help her keep a routine, Delaney
Sarno is in Donna Hennings' class for children with special needs at
Southern Pines Primary.
Hennings works with 5- to 8-year-olds
in the class at Southern Pines Primary, one of the first schools in
the county and region to have a program designed specifically for
the needs of autistic students.
Teachers use a strict and closely
followed behavior program that teaches the students like Delaney how
to get through a typical day.
Hennings has worked with autistic
children in Moore County Schools since the late 1970s.
When she started teaching, she had
five children from three counties, she says. Today she has 11
children just from the Southern Pines area.
Her students usually don't
communicate very much, and have a very hard time understanding what
other people are saying to them, Hennings said.
Children with autism are usually more
sensitive to sights and sounds, and can react strongly to something
as simple as a handshake, or in Delaney's case, fluorescent bulbs.
The students in the class vary along
the autism spectrum.
Each student has an individual
routine for the day and each has his or her own schedule and small,
laminated pictures in a row that help to identify the activities
they need to do at given times.
The laminated picture cards are
specifically tailored to the needs of the individual child.
Students have their own
personalities, their own likes and dislikes, and Hennings tries to
modify books and activities to her students' abilities.
"Each one is really like a little
puzzle," Hennings says.
Many people with ASD have a difficult
time following one action with another.
Putting a sock on the left foot
doesn't mean that a sock will go on the right foot.
In Hennings' class a picture of a
blue toothbrush tells a child that his next activity is to brush his
"You need to think about what you do
because they don't know what to do," Hennings says.
Impulse control is a big part of what
she tries to help her children develop, Hennings says.
"It takes a lot of patience,"
Autistic children do not understand
what is dangerous, or repetitious, so they can get stuck on one
activity and will do the same thing for hours on end, forgetting
what they started doing in the first place.
Visual clues like the cards,
repetition, and organization all help the students get through the
Even if the students can't speak,
organizational charts help them with activities and coping behaviors
written out for the teachers if they get upset.
"What we do to accommodate that is we
use a lot of pictures," Hennings says.
Hennings makes a large majority of
the materials in the room herself.
"There aren't a lot of materials for
kids with autism," she says.
Ritualized behavior are common
indications that a child is autistic.
Some scientists say some classic
autistic behaviors such as rocking or flapping of hands are ways to
calm themselves, or make themselves aware of where they are in
relation to other objects or people.
Specific causes of autism are
unknown, and it tends to be a very misunderstood disorder.
"Someone likened it to being in a
foreign country, knowing the language, but then being bombarded by
sensory (stimuli), like noise. (Also) the person speaking too fast,"
Maryann Sarno says. "One of the things that we noticed early on was
she removed herself. I really noticed that especially when there are
a lot of other things going on."
Almost all people on the ASD spectrum
have at least some level of difficulty in communicating.
Language skills are late to develop,
if they develop at all, depending on how severely the disorder
affects the brain.
"Having a conversation is really
difficult for Delaney," Kristen Sarno says.
Finding the correct words isn't easy,
"She will sometimes get words mixed
up, pronouns especially," says Maryann Sarno. "She is very
intelligent and I think that a lot of these children are
misdiagnosed or misunderstood because they can't verbalize what's
going on. They can't really tell you what they know."
As Hennings and the Sarnos well know,
a change in routine can be traumatic.
"Trying to incorporate changes is a
very slow, methodical process," Hennings says.
She takes her students on field trips
into the community to help them adjust to their surroundings and
make things more familiar.
"They still have to learn to live in
society and that's one of the things that they do in school. You
have to teach them things that we just learn automatically," Maryann
Students also attend a water therapy
class on Friday mornings at the FirstHealth Center for Health and
Fitness in Southern Pines.
The outing in the pool is one more
way to build necessary skills.
The water is soothing for the
children, but it also helps reinforce the everyday activities of
dressing and undressing, showering, and following the leader.
Martha Miller leads the class, and
she's used to working with children who are afraid of the water.
"That has been such a great
experience," Hennings says of the water therapy.
Students and teachers alike call her
"And one of the things about the
water therapy is that it puts them on much more equal ground with
other children," says Maryann Sarno. "They really need a lot of
physical therapy. They need to do very physical things, and I don't
see a lot of that in the schools.
Kristen Sarno, works with Delaney to
try and reinforce what she has learned in class.
"I do try and change it up, I know
she needs it (behavior modification) for her behavior, but I also
don't want her to get 'stuck.' I'm trying to mainstream her at this
point; I want her to be able to interact with other kids."
Even though Delaney would most likely
need a personal aide, like many of the children in her class, she
would do well, her mother thinks.
"She can survive in a classroom,"
says Kristen Sarno.
There has been a sharp increase in
the past two decades in the number of cases of autism, Hennings
says. The need has grown but the public is largely unaware, she
What most people don't realize is
there are fabulously talented citizens with ASD living and working
in their communities.
"It takes a person who can focus so
totally (on that subject)," Hennings says. Some breakthroughs in
marketing, math, science and art have been made by people with ASD.
Temple Grandin, a woman with autism,
revolutionized the humane slaughter of cattle for the beef industry.
People with autism can devote copious amounts of their time to
singularly focus on a subject, or an aspect of a problem until they
find a solution, or have worked through it.
Best known in the movie "Rain Man,"
autism shapes the world of not only the person with the disorder,
but also the family.
Mary Anne Sarno and Christine Garton
are two family members who have formed Parents of Amazing Children,
a support group of The
Family Support Network of the Sandhills . PAC can be reached at
692-6123 (ext. 15).
Christine Garton's son Scott just
turned six last month, and he becomes very upset if his mother shows
up unexpectedly at Hennings' class.
What most parents don't understand
are the challenges they will face with an autistic child, and most
parents don't know how lucky they are, Hennings says.
Sarno, Garton, and others are trying
to raise awareness of the disease to make life a little easier for
their families and for their children.
The group is a way they can lobby
together for the things that are necessary for their children.
"We all want services and we want the
best for our children," Garton says. "Everything has to be catered
to these children."
The group meets the last Monday night
of every month at Our Saviour Lutheran Church, in Southern Pines.
The women have a speaker and hold
open meetings, and are trying to educate everyone they can,
particularly those most involved with the children, such as teachers
Doctors aren't always educated about
the disease, and can misdiagnose autism, she says.
Delaney Sarno was originally
diagnosed as developmentally delayed with Attention Deficit
Hyperactivity Disorder, her mother says.
The earlier the diagnosis is made,
the earlier the family can begin to cope with the child's behavior
and special needs.
Maryann Sarno wishes there were a
little more tolerance and understanding.
"Delaney has to learn to conform to
the general public," she says. "I'm hoping that the schools and that
the administration and the public in general start to understand
about these children and be more tolerant in general. They have so
much to offer and such an interesting way of looking at things."
Caroline Kornegay can be reached at
693-2484 or by e-mail at